Need attnl info on IVIG

[gurs]

Does anyone know about Gammagard by Baxter? My doc recommended IVIG and was reading about how different these solutions can be..some add preservatives etc. I seem to be reacting to everything, and Im quite concerned about this.

I heard that I can order a particular brand, and they can actually do it at my home, with a trained nurse? Uhmm....From what I read, Gammunex seems to be good.

Any suggestions?

thanks

Gurs

[irish]

gurs, I was on Gammagard for 11 months until I had a severe allergic reaction to it. These things can happen and one never knows why. The good thing is that there are other products they can switch you to. The Gammagard is one of the products that does not contain a certain kind of sugar. It has less impact on the kidneys and is one of the newer products.

I was on the liquid Gammagard 80 grams one day a month and it took about 6 hours to infuse. I would not be researching all these products and worrying about it. I would just ask the doctor about any concerns you have. The fact is these products help but it is not always over night. Can take months. Some people do get immediate relief, but the IVIG is given for many different conditions and there are many different products.

These immune gamma globulins are made under the most stringent conditions and have been run through a process to take the HIV etc out of it. My doc told me they take the immune globulin from 2000 to 10,000 people to make up one batch or type of a product. It is very time consuming and exacting technology and that is why it is so expensive.

I would encourage anyone who is able to give blood to help make these products to do so. I have asked about it but can't due to some of my health issues. My husband can't because he is too old.  A person can get paid for donating blood for this cause. Many towns have a blood donation center that is separate from the Red Cross.

Good luck with your IVIG. Also, ask what type of pre-medication they give you so that you are well versed in your treatment. And remember, drink plenty of fluids the day before, day of and day after as it helps prevent the headaches. Irish

[gurs]

The hospital says they only can use Gammagard..not hearing great things about it.
Trying to see if I can order Gammunex, and have nurse do it in my own home.
I heard the slower the infusion, the better too, plus the pre-med.
I will check with the doctor and see what he recommends...I guess if he wants me to have it in the hospital, I wont have a choice in the matter.

Thanks for all your help/advice Irish..

Gurs

[irish]

gurs, My doc has a very large practice and has formed a company that is separate and does the IVIG for his patients and many of the patients in the twin cities area and states close by. He does a lot of Gammagard and I have not heard anything negative about it. I am speaking of the liquid. The gammagard powder is another story. My doc did not want me on the powder at all due to too many problems.  Must be an older product that hasn't been fine tuned.

Also, the amount of the product that you receive determines whether you can do it at home subq. I am on such a high dose that it is not feasible to do it at home. I am on the Gammunex now and have no complaints.

Most placed premedicate with benedryl, tylenol and IV hydrocortisone and people get along well on this. Helps keep the reactions to a minimum. I have only had minor reactions where I feel "fluey" the night of the infusions and will have a slight headache in my forehead. Tylenol helps along with a long nap. I have not had the spinal type headache and as I said that increase in fluids makes a huge difference.

The products contain a large amount of protein and the body will pull fluid out of the spinal cord resulting in spinal headaches---thus the need for more fluids.  Good luck Irish

Also, with the sensitivities that you mention it will be hard to tell how you will withstand the infusions. I am very sensitive to many chemicals etc and that has not bothered me.

[gurs]

Oh, that is good to know. From what Ive been reading, the slower the infusion, the less likely for side effects. Not sure what I can do for the hydration. Ever since my hysterectomy, and having hardly no estrogen, Im dehyrated all the time, no matter how much water I drink?. My rheumy said the hormone issues causing me to have severe Sjogrens flare..I cant even describe the dryness...its just horrid. They mentioned about doing a saline drip before the IVIG or something, so maybe that would help. Will talk to my doctors some more. Also, did your insurance cover this? i know it's expensive? I guess my Blue Cross only covers 70%?

thanks again!

Gurs

[irish]

gurs, I get 4 bottles of 20 grams and they are 200 cc's or about 3/4 cup each. The first bottle takes about 2 hours and then the 2nd is about 1 1/2 hour and the last 2 usually go about 45-50 minutes each. This is a 15 minute more or less on the first bottles. I don't let them go any faster than 50 minutes on the last two. The nurses are very good and since I had such an allergic reaction they don't want to chance another one by going too fast.

Liquid gammagard reminds me of getting egg whites IV as it is so thick and it forms bubbles in the bottle and fills it up. I would think they could run in some normal saline prior to medicating you and starting the gammagard.

I was so lucky with the insurance payment. Because I was already on Medicare and was diagnosed after going on it I am covered from them and my BCBS supplement pays the rest. Actually the BCBS pays the biggest share. Mine was about 5000 dollars each time and I get it once a month. If you are getting it for the MG you may have really good luck and improve fast. I had been ill for so many years and had such terribly high bloodwork that I actually got worse after the first 2 days of infusions.

I scared my doc to death as I was so weak and having breathing issues. He had to put me on 20 mgm of prednisone for 2 weeks. I told him not to worry as no matter what kind of a stressful event I go through (negative or postive stress) I always pay the piper. I felt like I had hit a bridge going 60 miles an hour. I think I was a new wrinkle for him. Anyway, I am showing improvement and it has taken so much longer than I had expected. I think he was getting a little disappointed and I had told him that I had been ill for so many years that it was going to take me longer to improve.

I don't know what kind of a place you are having your infusion done, but check with them and see if there is some way to get it all covered. My doc is really great about dealing with insurance companies and I would bet that some of the really destitute people are getting free infusions. That is just the kind of guy he is. He really cares.

You can contact Baxter and see if they have a way to help you out also. Many of the companies have special programs because these products are so high priced. Irish

[gurs]

Wowie...thanks for all this info..Really helps!!! My Rheumy referred me to a wonderful Hematologist who did some labs and found that I have no IGM immunoglobulins, in addition to my non-existant T cells, and Sjogrens/Lupus just kicking my butt big time..with  instant menopause and systemic yeast issues as well. When I asked him about insurance paying for it, he said, "Dont worry", with your lab results, they will pay for it. I guess he has been doing this forever (he must be 75-80ish). They do this out of the hospital, but when I called his office last week, his PA said that many opt to have this done at home, and they can choose which brand of IVIG you want? I left a message to see if this would be applicable to me, since I have a history of not tolerating things very well?
It really seems the slower the infusion, the better....

thanks Irish!!

[irish]

gurs, I would bet that having the infusion done in a hospital setting is much more costly than a clinic. My infusion clinic is just down the hall from my docs office. All the docs are in and out much of the day just checking on people, getting coffee, etc.

At my clinic they have the person come in for the infusion and teach them how to do it. I don't know if the person gets more at home inservice or not. It just depends on how much you need.

You and I sound a little similar. My T-cells are 320 and my cd4 was 179 last fall. I am very low as you can see. I have had a lot of yeast infections also. Plus other infections. Doc thinks it could be a hereditary thing with me. I also had horribly high antistriated muscle antibodies with the myasthenia gravis, positive off the chart blood work for hashimotos and severe sjogrens plus asthma. That is it but he has been checking mem every so often to see if any new ones have cropped up. I am finally feeling better and the infections are not as bad. I have had 5 antibiotics this year so far but 2 series were because I banged my little toe up good and had the nail removed and had some infection in it.

Life is sure interesting. Irish

[kathylee]

This thread told alot of what I needed. THANK YOU BOTH!!!!!
Kathylee

[kathylee]

Gurs
I have more time to write now. I have a great Internist who DID set me up to get IV fluids before apulmonary exercise test cause she knew of my big concerns of how hard it would get for me to breath and function in the DRY hospital. This was actually the event that got the Sjogrens testing going. Now I will ask for the same thing I think for any IVIG. But since then I  by chance tried Penta water around medical proceedures. Now since the last time I wrote about how well I do on Penta I am aware there are places trying to out the Penta company as nonsense. Trust me if for nothing else it DOES work for people with issues of dryness. I drank it 3 days before and 2 after my coloscopy and felt like I did not even HAVE a proceedure done. Even I was amazed. I live on disability so I took this success as a piece of information but did many tests before I committed to it as a daily thing. I used to drink massive amounts of water and did not do the same thing. All I can say is try it and see what you experience. You will need to drink at least 2 bottles per day to gage a difference. For me a five day test revealed : increase ease of movement, increase strength, and lower pain levels. Around any kind of harder situation like a holiday, trip or such it could show up even more.
ABOUT ME GETTING IVIG..I too am sensitive to so much but this sounds like the safest bet compared to adding on ddaily drug of other sorts. Just today I am dealing with a lousy reaction to just a change in brand og generic mestinon. I was on Sandoz from the hospital but my local pharmacy got Global brand. Had breathing problems and freaky aches along with all over body aches like I have not ahd for a long time. Also never felt the usual peak strenght. These are similar to symptoms I have had before. Now I know it is the binders, colorings, fillers.
I hope you share here about your experience when you do get your IVIG.

Thanks So much
Kathylee

[irish]

kathylee, I would not have suspected that you are having a problem with reactions to the generic mestinon. I would bet that the generic you are now on is not chemically the same as the first kind you had. The generic drugs are not always as good as the trade name. Ask to try a different generic or possibly ask your doc if she thinks you need to increase the dosage of the present generic.

The generic drugs are not the same as the trade in many cases---no matter what drug you are on. The bottom line is once you get the dosage adjusted it may work just fine. This is true of many drugs. Some of the generic are just fine but one never knows for sure what a new brand/generic will bring. Irish

[gurs]

Kathylee,

THanks for the info on the Penta..Ive been drinking Figi and Smartwater, but will give the Penta a try..easy to do right?

I will wait until my doc gets back from vacation and go over all this.....I even had allergic reactions to Saline drip in the hospital ,and the doc's there told me it was from the
PRESERATIVES in the saline? I just laughed..I had rash and everything immediatley after?
I also cant handle all the pre-medications like Benedryl and high doses of steriods because of the dryness issue.

Anyways, we'll see what happens..

thanks again everyone...

Gurs

[kathylee]

GURS
Dont think I said this but if you try it for 5 days you will know if it work for you by then. Three bottles a day will give you the improvement. At first I could only afford 2 perday but at three I get the maximum affect. Now that its summer and Im sweating and I believe sweating more cause of the mestinon I am drinking 4 per day. I wake with dry mouth in the morning if I havent drank enough. The company suggests 3 per day. Altho Ive never gotten any interest from my rhuemies regarding the penta for Sjogrens it DOES keep me comfortable enough to stay off meds for dry mouth and I use less eye drops. Their website used to let you input your zip for stores. But you call their 800# to get same info.  800-531-5088. OH! I forgot the BIGGEST BIGGEST blessing for me!! See my lungs are affected by the sjogrens in dryness. I spent 2 years not running heat in the winter cause turning it on literally HURT (forced air). And that was even with humidifiers. And the doctors didnt believe me...even the first pulmonlogist I saw. I told him how I could breath wonderfully on rainy days but not in forced air. Even the techs smircked saying NO ONE with lung problems can breath well on rainy days. WELL..the Penta massively improved the comfort of my lungs. Now I also had to move out of forced air apartment but WOW! I was stunned truly by how much it helped my dry lung.

Kathylee

[irish]

kathylee, Pardon my ignorance, but what is Penta? Sounds like an "enema" but obviously this is not what it is. I am interested in this. Irish

[kathylee]

Penta is a specialized water that was developed by a fella with FM. It IS not just water. You will understand thisif you try it. They have a website www.pentawater.com. It helped improve my sjogens before I was diagnosed. I had no expectations. It is not a placebo affect tho I am sure some will doubt me. All I can say is try it for a week at 3 bolttles per day and you will see. If you are on alot of med I just realized it could take abit longer tho I doubt it. It is a special molecule that hydates faster. In lite of this dont drink it right before bed. I tried and within 2 hours youll be up peeing. If you start early in the morn and do your 3 bottles you wont have as bad dry mouth in morn. I dont at all anymore.
Kathylee